KAREN: A small bump that looked like a pimple showed up on Tom’s face in October 2012. We were wintering in Portland, Oregon, where our daughter was about to give birth to our first grandchild. Since Tom was an old hat at basal cell and squamous cell skin cancers, this little bump did not raise a big red flag. By the time we got back to [our home in] North Idaho in March, he went to the doctor, who burned it off. It did not go away, so three months later, it was burned off again.

TOM: Finally, on the third try, they biopsied it. I was like, ‘Come on, something’s not right here.’ Then when they came back with the results that it was Merkel cell — I didn’t have a clue. I’d never heard of Merkel cell, and obviously most of them hadn’t either. Karen, being the great researcher that she is, found out all about it.

KAREN: It was diagnosed as Merkel in August 2013. Luckily, my Internet research brought me to Dr. Paul Nghiem’s website and to the Merkel cell carcinoma Google group, which confirmed that we should definitely get an appointment with him. We did after Tom had a wide-excision removal of the bump at the Seattle Veterans Hospital along with a sentinel node biopsy, which was positive. He was staged at 3b. This was followed by six weeks of radiation at the Seattle VA, completed in December 2013.

TOM: When we came up [to Seattle], we made an appointment to see Paul just on our own. That was probably the best thing we ever did, truly. I was still overwhelmed. Thank goodness my other set of ears was there, because Karen was much better at processing it.

KAREN: It was good to talk with somebody who hadn’t treated just one or two or three cases of it. By the time we saw Paul, he had seen over 1,000 cases. We just figured it would be good to touch base with him, and going down the road, if our doctors at the VA would consult with him, we’d be ahead of the game.

[After the radiation] Tom had a follow-up scan back here at the Seattle VA. It showed no new tumors. But that scan was only from the chest up, and after consulting with Dr. Nghiem, he said the next follow-up scan should be the whole body. So at the end of May 2014, Tom had a whole-body scan. It showed a large mass in his abdomen, which was biopsied and found to be MCC. He was now stage 4.

TOM: I had already gone back to work and was ready to get on with life. I still had plenty of fight in me. But it was hugely deflating.

KAREN: Dr. Nghiem was hoping to get Tom into a trial for people who had not yet had chemo. [But because the trial’s start date was uncertain], Paul said he thought we needed to start chemo to buy us some time until another clinical trial for a different immunotherapy may be coming to Seattle. Tom started chemo at the Spokane VA in July 2014.

TOM: I was frightened of it. My oncologist called it ‘salvage chemotherapy.’

KAREN: Hearing the word salvage was a little hard. And it was the first time we’d heard the word terminal. Even though I would read it on Paul’s website — Tom didn’t always want to know all the dirty details.

TOM: Karen is a ‘knowledge is power’ kind of person. This has definitely been a team effort, and I’m so fortunate. To go through it on your own would be pretty rough.

Karen: At this point it became clear that we would have to close down our landscape maintenance business as it was a very physical job and one I could not do without Tom. There wasn’t a lot of hope and not any options for treating MCC.

TOM: I decided, well, if my life is going to be this short, I want to go live next to my daughter and my granddaughter and my son-in-law. So in the middle of chemo, we sold our home, Karen packed up all our stuff and we moved to Oregon. The oncologist at the Portland VA was on board with the whole idea of a clinical trial. So it was just a matter of time. But before the trial started, my bile duct pinched shut because of a tumor. I got super sick. I turned yellow. I itched all over. That was truly the lowest point of my life. I really thought that was it.

Karen: It was December 2014. By that time, the clinical trial for the experimental immunotherapy drug had begun in Seattle, but Tom was very sick. I called his family and a few close friends and said, ‘If you want to visit with him, you should probably come now.’ Tom is a very optimistic, positive person, and this was the first time he told me he didn’t know if he could go on. I was heartbroken. I told him to just try and hold on a little longer. We had just celebrated our 35th anniversary.

TOM: Then a bile duct was stented — twice — to make it flow again, and they did one radiation treatment to my pancreas to hit that big tumor that was pushing on the bile duct. And it worked. That allowed me to become eligible for the trial.

Karen: We met with Dr. Nghiem and Dr. Shailender Bhatia to discuss participation in the trial and sign the paperwork, and a week later we went back up for his baseline CT scan. On March 30, 2015, we went for his first infusion of what we now know as avelumab. But first we had to review the baseline scan results. There were many new tumors.

TOM: It was awful. They said, you have all these tumors. I thought, ‘Oh my goodness.’

KAREN: It was like we got hit by a freight train. We were so excited about starting the trial, but we were totally blown away that there were so many new tumors. Besides the large one in his abdomen and the pancreas, he now had tumors in his kidneys and liver and lungs. But we had struggled so hard to get to this point for Tom to start this trial. Tom just said, ‘Hook me up.’

TOM: Trust is part of it. Paul is such a positive guy. You just feel like you’re with someone who really has your best interest at heart. Dr. Bhatia as well. I was like, ‘Let’s do it.’ The trial truly felt like a last-ditch effort.

KAREN: In six weeks, we had the first follow-up scan. Dr. Bhatia was running a little late. So Dr. Nghiem came in, and his assistant. Remember, they all came in the room, with their assistants? I thought, ‘This is really good news or really bad news.’

TOM: My anxiety was really high.

KAREN: Dr. Bhatia came in and said, ‘Good news!’ That’s something Dr. Bhatia does right away on scan days. He always lets us know right away. No waiting, no small talk. Paul wrote ‘35%’ [how much the tumors had shrunk] on a piece of paper and they held it and they took a picture.

TOM: We were packed in a little exam room. I was about in tears when they told me the way it was going. It was so emotional.

KAREN: That was around late April 2015. Tom has been coming in every two weeks since [for infusions]. The tumor status right now is about 92 percent reduced.

KAREN: We watch our 4-year-old granddaughter once or twice a week. She keeps us running at the park and playing.

TOM: I thought she would never be part of my life.

KAREN: When we moved [near Portland], Tom really wanted to buy a house. I was like, ‘I don’t have a job. I don’t know if I could afford a house if you were gone.’ I was thinking we should move to a condo. But that would just be soul-crushing for Tom. He needs to dig in the dirt. Now I’m glad we did buy a house.

TOM: She did a lot of things to please me. I know that.

KAREN: Besides being really grateful to Dr. Bhatia and Dr. Nghiem, we feel super grateful to all the hardworking researchers who work on developing these drugs in their labs, sometimes for years without any breakthroughs. It takes a lot of hard work and determination that doesn't always get recognized.

TOM: I feel very lucky, if that’s a word that can be used, that I’m living in this time and in this area, that this trial could even happen. And I feel so grateful to my wife, especially, who truly was the driving force that even got me here and who helped me fight to be here. If it all went sour tomorrow, I’ve had a couple of years past the lowest point of my life where I can ride bikes, I can go on hikes, I can play in my garden, I can love my grandkid. It’s a wonderful time.

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